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My Afib history and upcoming open heart Maze with mitral valve replacement
70 year old female here. I was diagnosed with Afib 6 years ago, but I think I have had it much longer. I can remember wondering why I started to get out of breath so easily but wrote it off as getting older and overweight. In 2012, I had a couple of bad attacks, one on vacation in the northern woods that I was sure was a heart attack. My sister got me to the nearest hospital where they hooked me up and said, "Did you know you are in Afib?" Um, no. At least it wasn't a heart attack.
Back home in SE Michigan, I saw an EP at UMich who started me on Tikosyn and warfarin. Echo showed damage to both my mitral and aortic valves that is consistent with rheumatic fever though I was never diagnosed. The stenosis is mild for the aortic, moderate for the mitral. I was curious about other possible causes, so I asked to be tested for sleep apnea. Mild to moderate but I have not been able to tolerate CPAP after three tries.
After 5 years, Tikosyn stopped working early this summer (soon after I was switched to generic, but my EP doesn't see a connection), and I have been in atrial flutter since then. Several scheduled cardioversions had to be delayed because my INR was jumping over the place, but I finally had one in August. I was in NSR for about an hour, then back to flutter. Tikosyn was stopped and my (new) EP scheduled a catheter ablation in September. The pre-op TEE showed "sludge" (the actual term!) in my left atrial appendage, so they cancelled the ablation because of the heightened stroke risk and referred me to a cardiac surgeon. The next step appears to be the open heart Maze procedure with LAA closure and mitral valve replacement (tissue). I had a cardiac cath 2 weeks ago to rule out any blockages - all clean, and it confirmed the valve problems. I do have significant enlargement of the left atrium (another reason I think I had Afib before 2012), but everything else seems normal, and while my surgeon thinks it decreases the chances of ridding me of Afib without another ablation, he puts it at 75%. If they have to do another ablation to "touch up", it is higher.
I have one of the world's best cardiologists at Michigan, and my EP and surgeon are highly regarded and experienced, but I am scheduling a second opinion at Mayo in Minnesota. Two reasons: 1) I am somewhat freaked out at the thought of open heart surgery and I like Mayo's ranking and team approach, and 2) I grew up not far from Rochester and I have relatives there who are willing to help with my recovery.
Thanks for reading so much! If anyone has recommendations for any of the surgeons at Mayo who do "The Maze", or about anything else, I would be pleased to read them.
macaodha, December 1, 2018 4:45am EST
Kitzkatz ... good morning! I read your Afib History with great interest ~ thank you for sharing. I'm very interested in following your journey, your upcoming surgery, and hope you'll do some follow-up writings for us. I believe many of us can relate to where you are right now, and it sounds like you've done a tremendous amount of research, even more than me! LOL
One cardioversion in 2014 started my story, then an RF ablation which lasted 3 years, then two more cardioversions in 2 years, the last this past May, now in NSR while on Flecanide, Dilitiazim, Ramipril (BP) & Eliquis. I'm told that the drugs most likely won't last forever, so there's the possibility of another ablation in my future
Again, thanks for sharing. A few of the thoughts you shared have prompted questions for my cardio-doc at my December's appointment with him.
My very best to you ... Dick
P.S. for what it's worth & you may already know, in the 2018-19 US News & World Report on hospitals across the country, the Mayo Clinic in Rochester, MN you mention is rated #1 overall and #2 in Cardiology; the #1 being the Cleveland Clinic in Ohio for Cardiology-related problems. The mistake I made in 2015 when I had my ablation was 1) going to a small hospital that had performed less ablations, and 2) using an Electrocardiologist that didn't have a lot of experience. Back then I was unaware of the StopAfib forum or I would've known better. Thanks MELANIE for this forum, all you have done for us, & continue to do!
So, Kitzkatz, my advice would be, go for the BEST!
MellanieSAF, December 1, 2018 10:05am EST
You said that you cannot tolerate CPAP after three tries. Please tell us more about what didn't work so perhaps we can help. The CPAP is perhaps the most important thing you can do for yourself; getting it working and optimized BEFORE your surgery will increase the likelihood of your surgery being successful. Even maze procedures fail due to untreated sleep apnea.
Thanks for the kind words.
For those interested, there are a lot of top doctors and centers represented on the faculty of our patient conference each year, and you can learn a lot by watching the livestream replays of the conference (access them here: https://getinrhythm.com/2018-livestream-registration/).
Additionally, StopAfib.org does a couple of live chats each year in collaboration with the Cleveland Clinic's afib experts, Dr. Oussama Wazni and Dr. Walid Saliba. The next one will be December 14, and you can submit your questions in advance. Details are here, where you can also access the transcripts of all previous chats, going back to 2011: https://www.stopafib.org/newsitem.cfm/NEWSID/634/
Jeanamo815, December 1, 2018 7:10pm EST
Kitzkatz, your story is an interesting one and is also informative. I wish you did not require the procedure, but think you are very wise in finding the best posible EP as well as a highly rated facility...Mayo....in which to have the surgery.! It helps to know that you will be in good hands and that can be very. reasuring. . We will all be thinking of you and wishing you the best for a successful surgery and a good revocery.. Let us know how you are doing and continue to post in our forum. Thanks for sharing your story.
Wishing you the very best,
(My Aa-Fib Experoemce Community leader)
TR, December 2, 2018 5:47am EST
Regarding your comment, "For those interested, there are a lot of top doctors and centers represented on the faculty of our patient conference each year, and you can learn a lot by watching the livestream replays of the conference (access them here: https://getinrhythm.com/2018-livestream-registration/)", I watched three years of the Stop AFIB conferences to help find the right EP for me. It was so valuable and lead me to Dr Natale, the best decision I have ever made. You are right, it was truly a great resource. Thanks.
Christi6513, December 2, 2018 10:56am EST
I don't know anyone at Mayo doing "The Maze" as I haven't investigated that yet. However, Dr. Thomas Munger, Mayo EP, was recommended to me by a University of Iowa Hospital and Clinics EP. Dr. Munger performed a cardiac ablation on me in March and so far it's been successful. (So thankful!)
Let me know if you learn of a good doc at Mayo, Rochester, doing "The Maze." I live in northern Iowa and go there for my cardiac care. Thanks and good luck to you.
MellanieSAF, December 2, 2018 11:16am EST
Here is the list of cardiovascular surgeons at Mayo:
I don't personally know any of them, though have heard of Drs. Daly, Dearani, Schaff, and Stulak, but don't know much about them. I don't know which do the Maze procedure. You can use the link above, and click on each doctor's name to get more details. I clicked on a couple of them and Stulak's credentials listed Maze, and Dearani's did not (he is the department head though).
Kitzkatz, December 4, 2018 8:16am EST
Thanks for all your responses and apologies for not replying sooner. I will try to answer questions and comments in some random order.
There are four surgeons at Mayo (Rochester) who do the Maze procedure, but I am choosing to see Dr Stulak. Dr Schaff was recommended to me by a friend of my sister-in-law who has been his patient through two valve replacements and who he credits with saving his life - twice. Dr Schaff and Dr Stulak wrote a review of Maze procedures back in 2015, "The Cardiac Surgeon as Electrophysiologist". It's free.
It is not the most reassuring summary, but it does show how fast this field is evolving, especially with the devices to make the maze and the sets of ablations that are most successful. There aren't any large scale studies to determine what's best, so I think we are all guinea pigs in this area.
Dr Stulak's cv on the Mayo site is extensive, including "Special interest in surgical ablation of atrial fibrillation and evolving techniques of alternate energy sources, as well as lesion sets", which sounds good to me. Dr Schaff doesn't have as much information, but I suspect this is partly the fact that Dr Schaff has a more established practice. He is in his early 70s, Dr Stulak mid 40s. Dr Stulak also did a fellowship at UMich, so he is a fellow Wolverine, for whatever that is worth. My hope is that they will get together to figure out what/who is best for me, but I had to choose one to see first. I'm still in the process of sending my echo and cath images. Unfortunately, I fell last week and wrenched my back which may put off travel for awhile. Sometimes I think I am bouncing from one thing to the next, no pun intended. My back has slowed me enough that I don't notice the flutter!
My C-PAP history is a combination of claustrophobia, other stuff going on that interrupted my trials, not seeing positive results and the inability to find a mask that works for me. I feel more motivated now, and I have discussed the possibility of repeating the sleep study to start over with my sleep disorders doctor (who is also my neurologist). My surgeon here doesn't feel it is necessary before surgery, but it is on my list of questions for Mayo. I think it may come down to just how dangerous this sludge in my LAA may be. I have a strong history of stroke in my family, unknown to me if there was also a history of afib.
I also want to ask about getting dental work done beforehand. I was asked here to get a release from my dentist before surgery, but there seems to be some disagreement about having major procedures done before open heart surgery.
And, yes, I have a scientific background: MS in Geophysics followed by 30 years in a Biophysics research lab. Right now the advantage is that I can read medical journals, but that can be something of a curse, too!
Thanks again, I look forward to talking with you all as I go on this journey.
MellanieSAF, December 4, 2018 10:48am EST
Thanks for sharing what you have decided. I hope you can get through the list of things you need to do. It sounds like a lot to manage under the circumstances. Good luck with it.
I'm guessing that, since some of the top research on afib and sleep apnea is from Dr. Virend Somers at Mayo, Mayo will feel that having your sleep apnea under control first may provide you benefits in healing more effectively.
Thumper2, December 5, 2018 8:53am EST
Kitty, with regard to your CPAP/sleep apnea problems, have you been able to use the "nasal pillow" (ResMed)? I found it to have the smallest "presence" on your face. Of course, I was able to use it because my mouth doesn't hang open when I sleep.
OTOH, after using my CPAP for almost 3 years, I noticed that the number of "events" per hour had gone down to about 2, and I wondered if I really needed the CPAP. (I have had 3 sleep tests, the results of which were never explained to me, although recently my neurologist said that the last one showed 31 events/hour.) In two sentences, Mellanie was more informative than anyone else had been. She noted that one of the goals of CPAP is to get down to 2 or fewer events/hour, and that it's important to know if one's blood oxygen level goes dangerously low, if not using the CPAP. (I hope I've gotten this right, Mellanie!) So I got an oximeter that attaches to one's finger overnight and reads the oxygen level throughout the night, while I was off the CPAP. This simple test showed that my blood oxygen level did not drop off during the night. So, I have ceased using my CPAP. I don't know if this shows rightly that I no longer have sleep apnea. I am on Ramipril, Spironolactone, and Warfarin. My blood pressure has gone down to good levels (I have never had a problem with cholesterol), and since I've been faithfully using a treadmill, my shortness of breath has definitely lessened. I am still in AFib, though I never feel it because of the His Bundle procedure I had, which means that my ventricles are beating faithfully at 70 bpm (pacemaker-dependent).
I googled Dr. Virend Somers and watched a 13-minute video on sleep apnea and afib. Thanks for the reference, Mellanie. Kitty, I hope you can come to a satisfactory resolution of your sleep apnea questions. All the best!
Kitzkatz, December 5, 2018 2:12pm EST
Thanks, Judy and Mellanie. Given my Minnesota connections, I have been thinking of transferring most of serious conditions to Mayo. Luckily for my heart, my blood pressure has always been low, I have no cholesterol problem and I don't have diabetes. I think that is one reason why rheumatic fever looks like the culprit in my afib story.
Judy, the nasal pillows were my first, and probably most successful attempt as far as compliance goes. I may have tried them the third time, too, but my mouth does open and the chin strap drove me crazy. I tried one that fit over my mouth and nose, but my cheeks are different enough that I could not get a good seal on one without major discomfort on the other. I probably did not give that one a chance to be adjusted properly, but when I try again, I will look at the newer models where the hose comes off the top of your head.
I have forgotten how many episodes I had during my sleep study or while using CPAP, but it was a lot. The O2 meter is a good idea. That's a number I would like to know!
I will watch Dr Somers and some of the conference videos while I rest my back. I won't be surprised if Mayo wants my sleep apnea controlled before surgery, but I think the sense of urgency comes from the sludge in the LAA and the stroke risk. That may seem like an odd first reason to do open heart surgery, plus doing Maze and mitral valve replacement "while we are in there", but I understand it.